I found it easier to write this post rather than video it. So i sit here with a lump in my throat and a knot in my stomach to share these words with you.
My husband and I have recently received the news that our daughter has sleep apnea, and it is severe. We were not aware of our daughters condition. All we knew was our daughter was in pain for way too long, and we needed to do everything in our power to get to the bottom of it. We spent a year and a half in and out of the doctors office, and each time we were left clueless. We were beginning to think there was no end, or answers. But for our daughters sake we were not going to accept it as that. We were going to do everything we could for her.
The pain was getting worse and nothing was changing, and that is when the nice calm mom went out the window and I began demanding answers, and whatever testing they could run. We were finally referred to a specialist in Neurology, His first response when he looked at our daughter was tough to swallow but brought so much relief. He informed us she was having chronic migraines. WOW! We had an answer and he was going to help her.
After this news he knew we had to find the underlying problem to the migraines, and as a mother and father at our wits end we were ready. We have been forced to watch our baby be in pain on a daily basis, watching her become so lethargic she could not even recognize the urge to go the bathroom; watching our bubbly little girl become a couch potato with no desire to be a kid; and having to deal with her panic attacks that ended in her hyperventilating and passing out.
He gave us our first step in his professional opinion and he ordered a sleep apnea test. His office is hours away so to make things easier he sent the order to our local hospital. I waited for the call to set up that appointment and after weeks there was nothing.After months still nothing. We were still at this time calling every time she went downhill and got a migraine so severe she would fall to the floor. The doctor always had nothing to say, she was clueless. She would just tell me to keep and eye on her and give her Motrin or Tylenol.
This back and fourth game went on for about 8 months, and we were sick and tired of being set aside. We wanted answers; we wanted this test done! So after watching my daughter suffer the worst migraine she had ever encountered for 6 straight days that was it (yes I did whatIi could and I contacted the doctor several times during this 6 days). If I called one more time and they just told me to comfort her with pain meds I was going to lose my cool. I had to demand our doctor to see her, and it took calling the Neurologist hours away, to get him to tell our doctor that she needed to stop this episode.
My daughter was given a shot of muscle relaxer and as I waited for her medicine to kick in I questioned our doctor about our sleep apnea test that was order 8 months before this. She looked at me like I was dumb and said oh they cannot give her the test. I asked why. She said there is not enough reasoning for her to need one. The part that pissed me off the most is they knew about this for months and just forgot to tell me the request was denied, not once, but twice. So basically they were calling a specialist an idiot, because they did not think she needed to be tested.
As we left that office my 4 year old looked at me, with those bright eyes this pain has torn away from her, and with all the excitement in the world she said “Mom they Fixed me!”. I got a lump in my throat and behind my sunglasses my eyes filled with tears, because this was only temporary; but I was not going to take that feeling away from her. I was not going to steal her glory and her happiness of the relief she given when her pain stopped. I was so happy for her, and even though she is only four I knew deep down I did not have to tell her it was not forever. She knew.
The following day I called our Neurologist, who again is quite a drive away, and I told him we could not get our local hospital to do the test. Within an hour he got our daughter an appointment to be tested, and it was such a relief. So now my husband has to take two days off work and we have to go out of our way to make the trip to get a test done, that should have been done long ago at our local hospital.
We weren’t sure what to expect, we just knew that these people were willing to help us and help our daughter. The nurse and doctor were so amazing, and they made it so much more comfortable for us knowing they cared, and they wanted to help her. At first glance he did not see the number one sign that most kids show, which is enlarged tonsils, but that didn’t matter he was still willing to help prove this or rule it out.
That night, as we watched our daughter get hooked up to all these different wires and machines, the nurse was such a big help. She talked with us, and talked us through the process and assured us this was a good choice. She talked about herself and her personal life, and she took that step to comfort our crazy thoughts of what is happening. She was wonderful and I wish I would have hugged her before we left and told her how amazing she made us feel.
When she came in the next morning to wake us up after all the testing, she looked right at us and did not deedle around the truth. She made us aware that our daughter has severe sleep apnea for a child, and this was on one hand so nice to have an answer, but on the other hand hard to take in. She explained what it all meant, and when it comes down to it our daughter is not sleeping properly, and she is getting about 20 minutes of deep sleep in the early morning hours. The scariest part to take in is that every 10 minutes at night our little girl stops breathing and her brain has to make her breath, which is what keeps her out of that deep sleep.
We are at our next milestone and are awaiting the referral to have her tonsils and adenoids removed. I write this, because it broke her father and I. It was affecting me everyday to deal with the difficulty of her lethargic actions, as well as the incontinence, and the whining I didn’t know how to, and I will be the first to admit it. It was affecting her father on a whole other level, because he had to get up everyday and go to work, when so many times all he wanted to do is sit on the couch and cuddle with his hurting baby all day. We did not put our pain on others, or look for pity on social media, because this was not about us…it was about her and her pain.
I understand more and more everyday the saying “Don’t judge a book by its cover”. We are judged, not just my husband and ,I but everyone. We let others bring us down, and saddest part about it is we can deny it to the end…it does bother us, and we do care what others think. So when my husband is at work and he looks like he is going to explode, or you see me running around like a chicken with my head cut off; it is not because we are bad people or there is anything wrong with us. It is simply that we have a full book that we keep closed and this is just one small chapter of our lives. We don’t share, because we don’t want pity or charity, we simply have our focus on us and ours.
So next time you are running your errands, and you see that mother at wits end with her child; or you see that man standing at the gas pump next to you. Remember they have a story to, and just because of the look on their face; or the clothes that they wear, does not mean you have the right to put them down with a snooty look. Do not think you are better than, or that you have a right to judge them. No matter your successes…no matter your demons none of us can ever actually understand what the next man, woman, or child is going through.
One smile, one hello, even one nod of your head can do so much for someone in a bad situation. You don’t have to become their friend or hand them anything. Your one simple gesture could mean the world to someone in an unimaginable situation or mindset.